The mania of the Castillos

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Swedish Hospital is having a cutest baby photo contest! There are 6 categories: most adorable moment, first birthday, trick-or-treat, I love my pet, craziest hair day, and biggest sports fan.

Now, Sam is completely adorable and would definitely win if this were a cutest baby contest. However, this is a cutest baby photo contest. To make things a little more challenging, Sam has not had his first birthday, has never celebrated halloween, and doesn’t have much hair to speak of. He does have a pet, but she’s not crazy about him at this point in time. That leaves most adorable moment and biggest sports fan.

So we dressed Sam up in his new Sounders jersey (thanks Grandma & Grandpa Castillo!) and snapped some photos. These are the two we chose for the entry. What do you think?

Babies are supposed to gain about an ounce a day. We went to the doctor today hoping that Sam had gained 7 ounces since last week. He gained 12. Our big guy is weighing in at a hefty 9 lbs 8.9 oz.

This is a huge relief to us, as we’ve been counting every milliliter he drinks and fretting over smaller feeds. The doctor is so happy with his weight gain that he doesn’t want to see us for three weeks. No more weekly weight checks!

A few weeks ago, I’d have looked at this picture and cried, “danger! danger!” We all know that babies are supposed to go to sleep on their backs in an empty crib–no blankets, no bumpers, no stuffed animals, no positioners, no pillows. Now that Sam is a GER baby, we’re having to let go of some of those rules.

Sam’s pediatrician suggested that we get him a wedge to sleep on in his crib. The problem is, the ones we’ve seen either look dangerous or are such a gentle incline that they won’t help at all. Since that won’t work, we decided to play around with Sam’s Pack and Play. First, we elevated his head by putting some pillows under one end of the pack and play mattress. The result? Sam scooted himself to the bottom of the mattress, somehow turning himself sideways in the process. We decided we needed a positioner to keep him from rolling or slumping to the side. After a few minutes with the positioner, we found him with his head deep down inside his swaddle. (Not safe!) The positioner kept him from moving to the side, but not from sliding down. Today we added some books at his feet to keep him from sliding down. It’s working so far, but we won’t be moving his pack and play up to the bedroom anytime soon. We’re more comfortable leaving him like this when we can peek in at him regularly

The past week has been tough. More than tough, the past week has been infuriating, frustrating, filled with moments of self doubt, self-recrimination, selfishness, and pettiness – and that’s just me.

Yet in the midst of it all, we have Sam. This little guy who fought so hard after being pulled from his mother’s womb 13 weeks early. The infant whose diaphragm was so underdeveloped that his chest collapsed inward when struggling for breath. He did wonderfully in the hospital, easily outpacing the weight gain of his peer neighbors and never getting sick. He never complains, only grunting and hiccuping to let us know when he’s hungry. He has major bouts of acid reflux that causes him to lock his head back, forming a crescent with his body that looks incredibly painful – yet afterwards he looks up at us with calm, trusting eyes and his iconic kissy face.

His feeding this week has been the hardest thing I’ve ever had to deal with. Before we figured out his GER, he would cry and thrash as we tried feeding him, he falls asleep 20 minutes into his feeds, his average intake is still only ~70ml per feed. This volume weighs particularly heavily on us as we remember the hospital nurses’ expectation that he should have been taking 85ml before we left. We imagine their faces, filled with disappointment and judgement that we took our baby home before he was ready. We felt guilty that maybe we did. I felt like a failure as a parent as I couldn’t even feed my son – something that seems like it should be so basic, so core to the experience of being an infant that it should come naturally and easily. Yet, he wouldn’t eat.

We just came back from the third visit to his doctor in a week. Sam had gained negligible weight between last Friday and Monday and the Dr. was a little concerned and was considering bumping us to higher calorie formula. He gave us Zantac to help address the GER symptoms in the hopes that the medication would resolve the issue. Well, a combination of the Zantac, us learning how to feed Sam, and putting him onto a (very flexible) schedule has had the desired effect. In the past 4 days, Sam has put on 4oz of weight.

That is the standard of perfect weight gain.

He still doesn’t eat the full 85+ml that we feel that the hospital nurses would expect but we now know that our little fighter has an efficient metabolism that doesn’t need as much volume.

I just want to say that paternity leave is awesome! Dave has this week and parts of the next two weeks off, and we’re really enjoying it!

My husband is turning out to be a really great father, not that I ever doubted he would be. He’s busy coming up with games to play during tummy time, figuring out the best way to burp him, and reading to him. Sam looks very into that book, doesn’t he?

What amazes me is how truly and completely I feel like I’m just barely treading water. This little guy who depends on us so completely represents an entirely different skill set than anything I have ever done before. How is it possible that I got into this with so little preparation? How have people done it all in the past?

We’re celebrating two birthdays this weekend: Sam’s adjusted birthday (today), and his 3 month actual birthday (tomorrow)! Preemies have 2 birthdates for the first couple of years of life. Too bad he can’t eat cake yet! Sam still had a lot of developing to do when he was born, so he is nothing like a 3 month old baby. He is very much like a brand new newborn–he is in the 50th percentile for height and weight for his adjusted age. Developmentally, Sam is actually a little advanced because of the extra three months he’s had outside of the womb. He can lift his head and his doctor confirmed yesterday that his smiles are real, social smiles and not gas!

I’m sure you’ve guessed already that Sam is finally home! Our last night in the hospital was pretty stressful. Sam was weighed at about 11 pm on Wednesday and was down an ounce and a half. On top of that, he got a bit constipated and wasn’t interested in drinking much milk. We were sure they wouldn’t let us take him home. Our nurse decided to weigh him again in the morning, and his weight was actually above what it had been Tuesday evening. Don’t ask me how that happened! It definitely wasn’t because he ate a lot!

We could hardly believe it when we were given Sam’s discharge papers. We signed a bunch of papers, unhooked him from his monitors and walked out of the hospital for what we hope will be the last time for a very long while.

We love having Sam at home, and I think he’s pretty happy to be here too. Darwin, our cat, isn’t sure what to think yet. We’ve had a few stressful moments and some sleepless nights, but we’re enjoying our time together as a family. Sam is getting used to sleeping in our quiet house instead of in a hospital room filled with the sounds of alarms, chatter, and crying neighbor babies. We’ve stopped checking to make sure that he is breathing every 15 minutes. It’s more like once an hour now. 🙂

For the last 3 months we’ve watched enviously as new parents walked out of the hospital with their newborns. For those parents, bring the baby home was just the beginning. We’ve already been through so much with Sam that it is hard to remember that this is just the beginning for us too. The first chapter of Sam’s life has come to a close, and now we get to enjoy our beautiful boy and really be parents for the first time.

Thank you for sharing our journey with us. Sam is a lucky little boy to have so many people in the world who love him so much already. This will be our last post on CaringBridge, but if you still need a Sam fix, you can go to http://www.castillomania.com for photos and updates.

Well, it appears that we have a GER baby. Reading around, I’m surprised we hadn’t heard more about it. Our experiment last night was a complete success. Sam is back to being the cheerful, easy to please kid that we fell in love with in the hospital. He looks around wide-eyed, he smiles at mommy, and he SLEEPS. Now we have to start backing out the changes that we made, looking for the right combination to continue this happy affair. Happily (and thanks to input from friends) we tried putting Sam into his swing this morning, and he does well in there also – we now have two sleeping places for the kiddo to drop off!

A word to the wise, though – don’t stand too close to the swing and fixate on it. You’ll get carsick.

It’s almost 1:00am. Sam has been home almost two days now. Hours of sleep thus far? 3.

Yes, I know, I have a newborn baby – I shouldn’t expect sleep.

Well, who asked you? As it turns out, our newly released child has a nasty case of GER (gastroesophical reflux). Last night we didn’t know that – we just thought he was being fussy ALL NIGHT LONG. Tonight we figured out our poor baby boy wasn’t being contrary or demanding – he simply had the reasonable expectation that, once he swallowed his milk, it would stay down. Not too much to ask, but apparently his body isn’t on the same page.

So we’re trying an experiment tonight. We changed back all of the things we’ve done since we got home (since he didn’t have this problem in the ISCU). We’ve put him back in pampers disposable, we’re making his formula from the premixed liquid, and he only gets 30ml of food at each feeding. He’s also sleeping partially upright.

That last one was the hardest to sort out how to do but a little judicious research online found that many reflux sufferers sleep best in their car seat so I decided to try that out as well.

The result? He has been sleeping out of our arms for 1 1/2 hours without a single regurgitation event. It may not sound impressive, but he hasn’t been able to spend more than 10 minutes out of our arms since 4 this afternoon (when we figured all of this out).

The nurses have consistently set the expectation that Sam should feed every 3 hours and complete a full feed of 85ml. The little guy, on the other hand feels that after eating 50-65ml, he’s good. To meet the nurses expectations we have had to push our little Samole to finish his feeds, fearing that we might not earn the privilege to go home otherwise. As a result, we’ve been stimulating him so that he wakes up enough to continue feeding. We twist the bottle in his mouth, pull the nipple out a little, adjust him in our laps, or burp him – all to wake him up and bring his conscious awareness back to sucking on his bottle. Since we started doing that, we’ve noticed an increase in spitups and regurgitations. Obviously not a desirable outcome. The final straw today was his second ever bout of projectile vomiting (this time all over Emily) – SHOCK!!!

So…our solution was to stop pushing him. He now consistently eats 50-65ml and has developed the habit of waking himself up every 2-2 1/2 hours instead of sleeping 3-4. This is still acceptable in the minds of the nurses and we’re all much happier for the change in plans!

Today was also the day that Sam got to try out his car seat for the very first time! The hospital wants to see babies able to sit upright in a carseat for an hour without desat-ing before they will discharge the infant. The obvious reason for this is that he has to be able to tolerate the ride home without having any problems. The danger that babies face is that, because they’re still so weak, they can’t pick themselves up when their heads slip forwards and their airway becomes blocked – clearly not a desirable situation. Sam passed the test with flying colors. He sat there like a champ for 10 minutes, decided he didn’t really like it there and fussed for a while – at which point the nurse put some warm blankets on him. That did him in! He slept the rest of the time. Check out the picture…AWWWW….